There is a beautiful girl named Kennedy and I would love for you to meet her! Her new website is: http://www.chargesyndrome.info/. She is AMAZING!
Kennedy and Mighty Max have experienced similiar medical complications, i.e. choanal atresia, open heart surgery, hearing loss, inability to eat orally, etc. (Unfortunately Max has the preemie issues /chronic lung disease too! Lucky Max.)
Her list of specialists include:
- teacher for the blind/visually impaired
- teacher for the deaf/hard of hearing
- early interventionist
- speech pathologist
- orthopedic surgeon
- cleft-palate team
- physical therapist
- occupational therapist
In Kennedy's 8 1/2 years of life, she has already experienced 18 surgeries. What a trooper! But despite that and all the sensory/behavior/developmental delay issues typical with CHARGE, this lil' powerhouse is in the Brownies and has attended regular school with support for the past three years. Plus look how adorable and spirited she is in her videos!!!
She does continue to have ongoing medical needs around her secretions, heart, tube feeding, etc, but she has come a long way developmentally. She is considered (and admired as) a "high functioning" CHARGEr. (Many are non-verbal and severely delayed.) Obviously I am HOPING that Max is another "Kennedy" in seven years participating in activities and attending public school....but only time will tell. We are certainly doing all we can to hopefully reach the same goals! :)
Kennedy is a true inspiration to me and soooo many other families with young CHARGE children. Her mom dedicated all of her time to Kennedy's therapy and it is certainly paying off!
Her mom, Lisa, also heads up the CHARGE online international support group. This group has been a true lifesaver for sooooooooooooo many of us parents. I seriously don't know what I would do without the advice, support, love and humor of my fellow CHARGE moms and dads.
Thank you Kennedy, Lisa and family for the amazing support and inspiration you give to the CHARGE community. We love you!